A Boston Children’s Hospital patient defies the odds after 22 years of treatment for a rare disease – Boston News, Weather, Sports

BOSTON (WHDH) — A Boston Children’s Hospital patient is defying the odds after spending 22 years being treated for a rare disease that affects his motor skills.

Luca Paolacci was diagnosed with Apert Syndrome at birth. The genetic disorder causes certain bones to fuse and requires patients to adapt to bodies that aren’t like other children.

“Every cell in the body is affected,” said Dr. Brian Labow of Boston Children’s Hospital.

Paolacci has had surgery his entire life and is a near-life patient at Boston Children’s Hospital, traveling back and forth between Massachusetts and his hometown of Zagarolo, Italy.

“It was always like a lifetime of work just because my fine motor skills needed constant fine-tuning,” Paolacci said.

Despite his physical difficulties, Paolacci has joined a rugby team, been involved in a marching band and lived a very active life. He is also studying automotive engineering.

Paolacci will now work on strengthening and lengthening his thumbs and deepening the mesh space between his fingers.

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https://whdh.com/news/boston-childrens-hospital-patient-defying-the-odds-after-22-years-of-treatment-for-rare-illness/ A Boston Children’s Hospital patient defies the odds after 22 years of treatment for a rare disease – Boston News, Weather, Sports

Sarah Y. Kim

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